Terminology and descriptions of navigation and related practices for children with neurodisability and their families: a scoping review
Abstract Background Children with neurodisability (ND) represent a significant population with a demonstrated need for coordinated support. Patient navigation has a primary focus on: facilitating access to and connection amongst fragmented systems; as well as the provision of educational and emotion...
| Main Authors: | , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
BMC
2022-02-01
|
| Series: | BMC Health Services Research |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s12913-022-07617-y |
| _version_ | 1828852105305128960 |
|---|---|
| author | Emily Gardiner Vivian Wong Grace Lin Anton R. Miller |
| author_facet | Emily Gardiner Vivian Wong Grace Lin Anton R. Miller |
| author_sort | Emily Gardiner |
| collection | DOAJ |
| description | Abstract Background Children with neurodisability (ND) represent a significant population with a demonstrated need for coordinated support. Patient navigation has a primary focus on: facilitating access to and connection amongst fragmented systems; as well as the provision of educational and emotional support. Given the distinct needs of children with ND and their families, programs built upon such core concepts could be of great benefit. The diversity of terminology encompassing navigation-related concepts and activities (e.g., care coordination, case management, family support), however, presents challenges to both practice and research. This scoping review examined the terminology and descriptions provided within published articles on navigation-type models for children with ND and their families. Methods The scoping review was conducted according to the Joanna Briggs Institute methodology. A preliminary search was completed on PubMed (NCBI), MEDLINE (Ovid) and CINAHL (EBSCO) to identify initial search terms, upon which a full search strategy was developed and executed in MEDLINE (Ovid) and CINAHL (EBSCO). After screening records according to our inclusion and exclusion criteria, a full-text review of relevant articles was conducted and data extracted using a researcher-developed tool. Under close supervision by the research team, study selection was primarily performed by one author. Results Of the 2597 papers identified, 33 were included in the final review. From the included papers, a total of 49 terms were extracted, 20 of which were unique. Across the diversity of terminology observed, articles provided detailed and rich descriptions characterized by four central domains, namely: (i) what navigation-related resources, supports and services aim to facilitate and (ii) provide; (iii) descriptions of their intended outcomes; as well as (iv) guiding principles. Conclusions This scoping review addresses a gap in our knowledge related to the specification of patient navigation and related supports as applied to the specific context of children with ND and their families. Given the particular needs of this population, we propose an empirically-informed integrative model that synthesizes the findings from this scoping review. We suggest that this framework can be used as a guide to the mindful characterization of how supports aiming to connect children and families to needed service are termed and described within future research and in practice. |
| first_indexed | 2024-12-12T23:45:50Z |
| format | Article |
| id | doaj.art-2f667654e4c945f9bf283303bb51a504 |
| institution | Directory Open Access Journal |
| issn | 1472-6963 |
| language | English |
| last_indexed | 2024-12-12T23:45:50Z |
| publishDate | 2022-02-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Health Services Research |
| spelling | doaj.art-2f667654e4c945f9bf283303bb51a5042022-12-22T00:06:50ZengBMCBMC Health Services Research1472-69632022-02-0122111610.1186/s12913-022-07617-yTerminology and descriptions of navigation and related practices for children with neurodisability and their families: a scoping reviewEmily Gardiner0Vivian Wong1Grace Lin2Anton R. Miller3BC Children’s Hospital Research InstituteDivision of Developmental Pediatrics, Department of Pediatrics, University of British ColumbiaSchool of Medicine, Queen’s UniversityBC Children’s Hospital Research InstituteAbstract Background Children with neurodisability (ND) represent a significant population with a demonstrated need for coordinated support. Patient navigation has a primary focus on: facilitating access to and connection amongst fragmented systems; as well as the provision of educational and emotional support. Given the distinct needs of children with ND and their families, programs built upon such core concepts could be of great benefit. The diversity of terminology encompassing navigation-related concepts and activities (e.g., care coordination, case management, family support), however, presents challenges to both practice and research. This scoping review examined the terminology and descriptions provided within published articles on navigation-type models for children with ND and their families. Methods The scoping review was conducted according to the Joanna Briggs Institute methodology. A preliminary search was completed on PubMed (NCBI), MEDLINE (Ovid) and CINAHL (EBSCO) to identify initial search terms, upon which a full search strategy was developed and executed in MEDLINE (Ovid) and CINAHL (EBSCO). After screening records according to our inclusion and exclusion criteria, a full-text review of relevant articles was conducted and data extracted using a researcher-developed tool. Under close supervision by the research team, study selection was primarily performed by one author. Results Of the 2597 papers identified, 33 were included in the final review. From the included papers, a total of 49 terms were extracted, 20 of which were unique. Across the diversity of terminology observed, articles provided detailed and rich descriptions characterized by four central domains, namely: (i) what navigation-related resources, supports and services aim to facilitate and (ii) provide; (iii) descriptions of their intended outcomes; as well as (iv) guiding principles. Conclusions This scoping review addresses a gap in our knowledge related to the specification of patient navigation and related supports as applied to the specific context of children with ND and their families. Given the particular needs of this population, we propose an empirically-informed integrative model that synthesizes the findings from this scoping review. We suggest that this framework can be used as a guide to the mindful characterization of how supports aiming to connect children and families to needed service are termed and described within future research and in practice.https://doi.org/10.1186/s12913-022-07617-yNeurodisabilityPatient NavigationNavigationScoping Literature ReviewCoordinationFamily Support |
| spellingShingle | Emily Gardiner Vivian Wong Grace Lin Anton R. Miller Terminology and descriptions of navigation and related practices for children with neurodisability and their families: a scoping review BMC Health Services Research Neurodisability Patient Navigation Navigation Scoping Literature Review Coordination Family Support |
| title | Terminology and descriptions of navigation and related practices for children with neurodisability and their families: a scoping review |
| title_full | Terminology and descriptions of navigation and related practices for children with neurodisability and their families: a scoping review |
| title_fullStr | Terminology and descriptions of navigation and related practices for children with neurodisability and their families: a scoping review |
| title_full_unstemmed | Terminology and descriptions of navigation and related practices for children with neurodisability and their families: a scoping review |
| title_short | Terminology and descriptions of navigation and related practices for children with neurodisability and their families: a scoping review |
| title_sort | terminology and descriptions of navigation and related practices for children with neurodisability and their families a scoping review |
| topic | Neurodisability Patient Navigation Navigation Scoping Literature Review Coordination Family Support |
| url | https://doi.org/10.1186/s12913-022-07617-y |
| work_keys_str_mv | AT emilygardiner terminologyanddescriptionsofnavigationandrelatedpracticesforchildrenwithneurodisabilityandtheirfamiliesascopingreview AT vivianwong terminologyanddescriptionsofnavigationandrelatedpracticesforchildrenwithneurodisabilityandtheirfamiliesascopingreview AT gracelin terminologyanddescriptionsofnavigationandrelatedpracticesforchildrenwithneurodisabilityandtheirfamiliesascopingreview AT antonrmiller terminologyanddescriptionsofnavigationandrelatedpracticesforchildrenwithneurodisabilityandtheirfamiliesascopingreview |